Alopecia means baldness. And there are lots of different types, of different causes. When most people talk about alopecia, they mean alopecia areata, which is the patchy type of baldness which occurs in young people, but there are other types. For instance ordinary-, the sort of baldness that men get, male pattern alopecia. Or if people put their hair too tight, they can sometimes get alopecia hair loss round the edges, that’s called traction alopecia. So, what we’re talking about is alopecia areata. And if it’s just patchy, that’s what we call it. If it affects the whole of the scalp, we call it alopecia totalis. And if it affects all the body hair, over the whole body – including pubic hair, arm hair, beard hair, eyelashes, eyebrows – then that’s alopecia universalis. And sometimes it can be in between. So alopecia areata, you can get the odd patch in the eyebrow or, or beard hair.

Could you tell me how common the different types of alopecia are?

Alopecia areata affects probably about one in a thousand people, one to two in a thousand people. So actually relatively common. It’s much rarer, I couldn’t give you a figure for totalis and universalis, but I would say that of all people with alopecia areata, a very small proportion, probably less than five percent, have totalis. And probably only one percent of those have universalis.

Cos like there’s three different types of alopecia. You’ve got like the areata, which is like what I had initially, which is like a small patch. And then I think it’s totalis, which is like all of your head I think, your facial hair and whatnot. And then it’s like universalis, which is I think what I’ve got now, which is like you lose everything. Which is great like there [gestures to body] but not so great there [gestures to head]. And it sometimes can affect your nails apparently. But I’ve never had any problem with my nails at all. So, yeah, I did start to look up about just the definitions and different types and the causes. Which, the causes, it just sort of said stress. Which I was like, well, I don’t really believe that. And there was other causes as well. You know, sort of with autoimmune, I think triggers were stress. And I just, I don’t think that my trigger was stress. And then like I was just looking at different treatment options. And there was like, I think there was, there is quite a lot, but I think by my point when I’ve got no hair like and not a lot of them applied to me. And I think, as I’ve said, like a lot of them took a lot of effort and there were, it’s quite sort of tiring stuff to do.

I didn’t fit into any of like-. So you’ve got categories for alopecia. Mine changed, all the way through. So I didn’t really fit into the category, I was like ‘well I’m probably more that, than that. But then I lost it all, so I was like, ‘okay well I’m that now. And like even if you asked me now, I wouldn’t be able to- I know there’s like alopecia totalis, I wouldn’t be able to tell you the others. Yeah. I don’t know whether that’s just cos it’s like I haven’t looked at it, because I don’t want to or I don’t really know. I rarely- I rarely researched it, to be honest. If I did, it would be because I was in a really good place about it, and it would be like ‘okay well I’ll just see what’s out there.

Alopecia areata does not scar. Scarring alopecia refers to types of alopecia which are due to inflammation in the skin of the scalp. So, for instance, there’s a condition called lupus which can cause alopecia hair loss which has a scarring process and that doesn’t recover. Usually-. Because the scar damages the hair follicles to the extent that they can’t recover. But alopecia areata is not a scarring process. The follicles are still there, but they may be very, very small. They’ve been attacked by the body’s immune system but they are still there and there is still the potential to recover. The, there isn’t a scarring process that completely damages the hair follicles so that they can’t recover.

I think a big thing that’s missed out on is how rapid or how different alopecia can be, so it can vary. So some people can have like their hair go in two weeks and other people will be losing their hair over a matter of months and, or like years, and so that really varies and has in a-, it’s interesting to see the different effects, cos it can have the same effect on a person that’s lost it in like three weeks to a person that has lost it over a matter of years, but then, struggling with it for years can sometimes be tougher and also it makes it less likely to grow back as well, like your chances of your hair growing back depending on how much you’ve lost, go down. So I know that they say, I think it’s after the first year of alopecia if it’s under, if it’s over a certain amount of hair gone and without like good regrowth then you’ve kind of gone from a 70% chance or something down to like a 20% chance of it regrowing. But then it’s all just numbers and guessing because, you know, people with alopecia universalis, they say, you know, they’re less likely to grow their hair back and I know of someone that had all their hair grow back, no treatment, just grew back out of nowhere and that was after 10 years, which is really weird because you don’t know, you just, I think it’s possibly because it’s your immune system and it could maybe be a different stage.

And you said about being entitled to wigs. Could you tell me a bit more about that?

Yeah and so my alopecia comes in several strains as far as I know I can’t remember all the technical names. But there’s bits where you only lose patches of your hair, so it’s generally just having occasional patches on your scalp and then there’s like full blown alopecia, universalis I think it’s called, which is what I’ve got where it, you just lose everything. And I think because I’ve got such a severe case of it, I’m, I think I’m entitled to two wigs under a certain sort of price off the NHS per year. And I know that other people aren’t because they don’t have sort of severe enough. But I, yeah, I am [laughs].

And are all of those wigs ones that you’ve found yourself or are they sort of NHS supported?

They are all ones that I’ve found myself. But I do have one that I got VAT relief on, it was like a proper one with like a parting and stuff. So I got VAT relief on that so it’s supported by the government. But yeah it was, it was to know that you, it sounds awful, it’s nice to know that it’s bad enough, your hair loss is bad enough that you qualify for something like that because with, I am probably felt just as self-conscious with the tiny little patch on the side of my head as I do now. But then I wouldn’t have been able to get a wig at that point and it sounds silly, but it’s good to know that my hair loss is bad enough that I can get that kind of support. So it’s nice to have, it’s nice to know first of all that it’s clearly common enough that there is something there in place to help people. And also to know that I can as a student buy a wig that is clearly quite expensive and get some kind of help with that. So yeah it’s, it’s, it’s good to know that that’s there but I’ve never really looked into getting an NHS wig because they tend to be quite expensive anyway and I think for the quality that you get, the one that I have, it’s like perfect for me and I’ll probably stick with that around for like until my hair possibly grows back. So yeah just to have the kind of VAT relief on that is really helpful.